PM2043: Kidney Replacement Therapy in Children with Special Medical Needs

Background: Kidney replacement therapy (KRT) with dialysis or transplant can be especially challenging in children with special medical needs and end-stage kidney disease (ESKD). Studies evaluating complications associated with KRT in children with special medical needs are scant. The current study aims at describing the characteristics and complications associated with KRT in children with special medical needs.

Methods: A retrospective chart review was performed of children with ESKD requiring KRT at our institution over two decades (from 2000 to 2020). Of these, the study cohort included children with special medical needs identified as having one or more of the following: moderate to severe cognitive or behavioral impairment, physical disabilities requiring direct caregiver involvement, and significant speech impairment.

Results: Characteristics of the 23 patients in the study cohort with ESKD and special medical needs are detailed in Table 1. Of these, 78.2% of patients had global developmental delay or cognitive impairment due to cerebral palsy, genetic conditions, or autism; 13% had a debilitating psychiatric condition, and 8.7% had paraplegia. There were 17% who were wheelchair-bound, and 21% were non-verbal. Ten patients (43%) were diagnosed with genetic disorders including but not limited to trisomy 21, Bardet-Biedl syndrome, and Joubert syndrome. Chronic dialysis was performed on 91.3% of patients and 65.6% received a transplant. Peritoneal dialysis (PD) was the preferred initial dialysis modality (77.3%). Switch between dialysis modalities was required in 36.5%. While 32% of the patients switched from PD to hemodialysis (HD), the rest switched from HD to PD. In this cohort, the annualized peritonitis rate was 0.5 episodes per patient-year (0.64 episodes per patient-year in NAPRTCS 2011 data). Patients on HD with a central catheter had a blood-stream infection rate of 3.6 per 1000 catheter days. A third of the patients had hemodialysis catheter dislodgement, and one patient pulled out her PD catheter at home. Half of the HD and PD catheters initially used, had to be replaced. The median hospitalized days were 32 (8 – 208 days). The median time to transplant was 33 months (13 – 71 months). In transplanted patients, median graft life was 53.5 months (20 -203 months) and Figure 1 represents Kaplan- Meier curve showing graft survival probability in the cohort.

Conclusion: Although peritonitis and blood-stream infection rates were comparable to other studies, it is important to acknowledge that challenges in medical care related to the patients’ special needs add to the complexity of care. However, adequate caregiver support and involvement makes KRT possible for patients with special medical needs.